Just saw this new article from Solve ME/CFS today. It's a report provided by a participant who recently completed their second visit. So now the NIH team has observed just how bad PEM can be and is giving participants protocol options for their follow up visit:
https://solvecfs.org/hope-for-the-f...tramural-post-infectious-me-cfs-study-part-2/
Since my PEM level after two and a half days of Visit 1 testing required assistance with bedpans, etc., I was not expected to be able to remain in isolation in the metabolic chamber after a CPET. In light of this, I was given three options: no further study participation, attempting the full second study protocol despite the low chances of completion, or an abbreviated protocol without the CPET and PEM measurements.
https://solvecfs.org/hope-for-the-f...tramural-post-infectious-me-cfs-study-part-2/